Young and overwhelmed
Hi all, I'm 30 years old, with the BRCA 2 gene mutation, and was diagnosed after my first high-risk screening MRI found a tumour - mixed lobular and ductal invasive carcinoma, stage 2, grade 2, hormone receptor positive, HER2 negative. Because of my BRCA status, I had a double mastectomy in February 2026. An 11mm tumor was removed alongside a 50mm DCIS component that was associated with the invasive tumor and adjacent tissue was removed from my left breast, but my right breast was all clear. The sentinel lymph node biopsy showed a 1mm micrometastases in one node (of two). Initially, the plan was just a double mastectomy followed by endocrine therapy, but the option of chemo has been put on the table post-surgery (and even the choice of two different regimes). My oncologist's justification was "we want to give you every option available because you're young" but it feels like I've just been given an impossible decision with no clear better option. I'm also having a lot of anxiety around chemo and the implications for fertility as I am yet to have children (I was able to freeze a small number of eggs pre-surgery but I would have to self-fund any further cycles). I'm not entirely sure why I'm posting this but maybe I'm just hoping someone will have had a similar experience (especially if you were diagnosed young or before having kids!) or have some words of advice because I'm feeling overwhelmed by all of the choices I'm having to make.
Molecular Profiling? Chemo?
Hi All, I'm recently diagnosed and my pathology reports from recent lumpectomy shows ER+, Grade 3, Ki67 20%, LVI present. All 6 Lymph nodes clear. I'm 47, fit, strong and healthy :) It's hard to believe this is happening in my body while I feel so normal. Apart from cording from my sentinel node biopsy! My specialists are recommending numerous treatment options, including precautionary chemo for 3 months. They've also mentioned Molecular profiling to see if my cells would respond to chemo or not. Also radiation and hormone blockers. I'm seriously considering doing molecular profiling so my questions are: Has anyone here made the financial investment to do this? How did it affect your outcome and final treatment decisions? Looking forward to hearing.Grade 3 Oncotype Test Chemo decisions
Hi all, I’m in the challenging time of making decisions about chemo and would love to hear experiences from others journey particularly with any similar cancer. I have had lumpectomy on left breast results showing- Stage 2A invasive carcinoma 25mm Grade 3, HR+ PR-HER2- with lymphovascular invasion but all 13 lymph nodes sampled as clear. I am 39yo and very active and healthy (apart from this)! I pooled my savings to get the oncotype DX ordered- I am now waiting for results. (Still can’t believe we have to pay $5000 for this). I understand the Grade 3 PR negative and lymphovascular invasion detected are likely risk factors that tip towards benefits of chemo. But I have been reading more about the effectiveness of hormone therapies like OS+AI and that perhaps I could avoid chemo. I will let you all know my score when it comes back- I hope it’s low but if it’s high I’m facing such hard decisions that any similar experiences may help! thank you
? Chemotherapy
Please HELP!! Hi everyone, i am 45 years old and i have recently been diagnosed with; ER positive Ki-67 positive Tumour size 12mm Toumour has been surgically removed 6 weeks ago with clear margins from right breast. Tumour grade 3 2 x Negative nodes I was told that i need radiation therapy and endocrine therapy. But i was given the option to decide if i want to have chemo as well! I am really struggling with making this decision whether i should have chemotherapy or not. Or do i just do Radiation and endocrine therapy. I was wandering if anyone has been in similar situation as me and how did they decide on treatment plan?Capecitibane
Hi there I now have secondary breast lung cancer nodules. My oncologist has trialed me on Pablociclib and Abemaciclib however nodules have continued to grow and increase in number. They are now suggesting a few other options, one of them being Capecitibane. Again symptoms sound awful, especially hand foot syndrome 😞 I would appreciate any accounts of personal experiences with symptoms and results after use. Thank you in advance 🙏🫶
Anyone had TC chemo?
Hi, I am likely going to start chemo possibly next week. It’s will be TC for three months. I am very worried about it of course. I would like very much to reduce my risk of peripheral neuropathy and wondered if there’s any advice on best things to use for hands and feet. Does anybody have any other advice or experiences from this sort of chemo?
Radiation post DIEP
Hello all, I am exactly 4 weeks post double mastectomy and DIEP (including complete node clearance) which I had after 6 months of neo-adjuvant chemotherapy. I had TNBC in my right breast with 3 nodes involved on the same side. My pathology report said I had clear margins and a complete pathological response 🙏 I have now been given the option of skipping radiation if I want to. A new study (B-51 study) published last year found that patients with complete pathological response to chemotherapy and a double mastectomy don’t benefit from radiation therapy. My question is has anyone skipped radiation or was given the opportunity to skip it and chose not to? Also, has anyone with a double mastectomy and DIEP done radiation and what were the side effects on the breast? Lastly, has anyone received radiation in the neck region and what were the side effects like? Difficulty swallowing? My radiation specialist suggested if I choose to go ahead with radiation she would recommend the sub-clavicle nodes in the neck (along with breast and armpit) as they’re the only nodes I have not checked surgically. Would be keen to hear anyone’s opinion or lived experience. Thanks 😊
Cumulative Side Effects of Chemotherapy
Hi, I have had surgery for BC in left breast and lymph nodes which has been follwed by chemotherapy. I completed my last session last Tuesday and have found the side effects this time very intense. Apologies in advance for the topic, it is not pleasant.At first, Following my final infusion I was unable to go to the toilet and since then (after using coloxyl and prunelax) I have experienced 'urgency' and have had to rush to the toilet frequently. I feel nauseous and have had pain in my stomach. Until this cycle, side effects were unpleasant, peaking n the expected days, etc. but this has been been really brutal. Is this normal? I am so looking forward to things settling down and I am grateful for the excellent care that I am receiving from the amazing oncology team. In about three weeks I will commence radiotherapy which I will receive every week day for five and a half weeks then I will see my oncologist and go on hormone blockers for 5-7 years. I understand that the side effects of these are unpleasant but as I am well passed menopause I believe that this will not be as bad as if I were a younger woman. I am 69 and was working .5 in an academic position until my diagnosis. I know that I am not going back to that position, this experience has been life changing and I have noticed some cognitive changes. They are not 'severe' but I am nowhere near as sharp as I was. I am accepting that and just hope to recover. Is it normal to experience such intense side effects on the final round? Kind Regards, AnniEye health changes
Hi all, wondering if anyone else has experienced deterioration or changes in eye health? I’ve recently been diagnosed with early macular degeneration and a slight worsening of pre-existing glaucoma (a condition in my family). But on a day to day basis I have noticed my eyes (over the last five months) have been consistently red, sore and very dry, even after sleep (Hylo Forte drops relieves them) and even when I take a break from Letrozole, the daily Aromatase Inhibitor medication I use. I wondered if weakening eye health is one of the longer term side effects of chemotherapy treatment. It’s about a year and a half since I completed the 17 month TCHP chemotherapy and immunosuppressants, surgery and radiation treatment for triple positive invasive lobular cancer (ILC). I’ve seen a couple of posts on this topic dating back to 2017 or 2018. I am conscious my mother developed macular but she was in her early 80s when it presented and it compounded her sight issues from glaucoma so she effectively couldn’t drive or see faces and images. Whereas I am about to turn 64 (happy days!) this weekend, I’m still in the active workforce and I hope to have more of a runway with my eyesight to enjoy the environment, the arts and the beauty of family and friends.Worried I’ll overdose on salt!
Hello, I’m new here. I’ve only had one round of chemo (last Tuesday) and I’m completely weirded out by my mouth turning into a foreign entity! The only thing that seems to give me any sense of my old self is salty liquid. I’m talking stock powder dissolved in boiling water - it’s now one of the few ‘foods’ that gives me any joy! I’m trying to eat a balanced diet, but finding it hard to do with zero appetite and a rebellious mouth. Worried I’ll overload my system with salt! Help!
